Memories, Not Regrets

I've made my choice. I learned many years ago that if you don’t like what you have you change it. I’ve struggled with that over these last few weeks because I do not like what I have but can only modify it, cannot truly change it. So I will make the choice to make a real change.

The choices we make in our lives define us. How we react to the vicissitudes of life, the ups and downs, how we choose to deal with them or if we choose to do nothing and passively accept them defines us and demonstrates the content of our character. I’ve always felt that inaction in the face of an unacceptable situation is in itself unacceptable. Well this is an unacceptable situation to me, and so I will take that action that I see best fits my core values and beliefs, within the limited set of options this situation allows. I firmly believe in the unity of mind, body and spirit, the need for all 3 to be equally strong. That is not the case, while my mind is still intact and strong my body is permanently broken and my spirit unable to recover, clinging to my broken body like a faithful dog to his dead master, unable to move on.

While I have learned a great deal in the last 6 months about being open and receptive to help, and have been overwhelmed at the level of help offered, I cannot accept this as a permanent situation, and the constraints of this situation dictate that I will be far more dependent on others for the rest of my life. As well my inability to do those things I hold most dear is also an unacceptable situation.

I’ve been very lucky to have lived several lives within my life. Transformation and re-invention have been constant themes in my life, even when I didn’t want them to be, and many of my role models have lived their lives in a similar fashion. One of the frustrations with this situation is my inability to complete the transformation from my former independent, able-bodied self to a much more dependent disabled self. But I’m 47 years old, have been very lucky to have experienced things beyond my imagining, met and been friends with some very extraordinary people, loved and been loved, and all in all, it’s been a good life. I have many memories but no regrets.

Many of the issues I’ve already put forth in the last blog entry, on top of those the new issue of a pressure sore pushed me over the top. I cannot imagine living a working life when at any time you may be derailed for weeks by a pressure sore, bladder infection or something else that we were told are a fact of life for the wheel chair bound. This is no way to live a life. I do not know or understand how others choose to continue this way, but for me the choice is clear. In many ways life means so much to me that I will not settle for anything less. I will not accept so constrained a life as a substitute for what I had before.

I am truly sorry for the grief this situation has caused to my friends and family over the last few months, and the grief this last act will cause, but over time that will fade, hearts will heal, and I will hopefully be a fond memory to my friends and family, but no longer a burden in any way, to your or myself.

I am truly grateful for the effort that everyone has put forth on my behalf; know that there is nothing more anyone could have done. There is nothing anyone could have done to keep me from this path; those of you who know me best know that once I make up my mind to do something that’s it.

It has been said that “what we have done for ourselves alone dies with us; what we have done for others and the world remains and is immortal”. Hopefully through my actions I will live on in your memories and hearts.

So I will make my last choice, not out of desperation or in response to a temporary situation, or in a belief that life is not worth living, but because I will not accept so constrained a life as a substitute for what I had before. This is not a decision I am taking lightly, not knowing what lays beyond is disconcerting and worrisome, but not so much as the very real fear of living out my days in this condition, in this pain. I died on April 26, 2009, and now I will finish what has taken too long to come to a conclusion.

Eric Arnold

“…for life’s not a paragraph

and death i think is no parenthesis”

e. e. cummings

Come celebrate Eric's life with us...

Please join Eric's Family & Friends in celebrating his life.

Date: Oct 24, 2009

Time: 2:35 PM

Location: CenterBeam Headquarters
30 Rio Robles, San Jose, CA 95134

VIEW INVITE for more details.

To Be or Not to Be...

To be, or not to be: that is the question:

Whether 'tis nobler in the mind to suffer

The slings and arrows of outrageous fortune,

Or to take arms against a sea of troubles,

And by opposing end them?

To die: to sleep;

No more; and by a sleep to say we end

The heart-ache and the thousand natural shocks

That flesh is heir to, 'tis a consummation

Devoutly to be wish'd. To die, to sleep;

To sleep: perchance to dream:

ay, there's the rub;

For in that sleep of death what dreams may come

When we have shuffled off this mortal coil,

Must give us pause: there's the respect

That makes calamity of so long life;

Hamlet, Act 3, Scene 1

I’ll ask you to read this blog entry carefully because at first glance it may seem more disturbing than it really is, but if I am able to convey the ideas and meaning to you the reader that I so very much wish to then it may make the next few weeks easier for us all, relaxing your hearts and minds a bit and hopefully close a gap that has been created between some of you and I, due to circumstances beyond any of our control. Why I opened with those famous words from Hamlet will hopefully become clear as well.

I’ve done my first full week at home, almost all of it by myself. I’ve had plenty of good company during this time, and no small amount of help from some special people. But the majority of the time has been spent alone, as it should be, as is needed for me to become fully acquainted with this new life I have been forced to adapt to.I’ll start with the obvious. I do not like this new life one bit. I hate it. There is nothing positive about this new life in comparison to the life I had before. Parts of this were apparent while I was stuck in bed at Care Meridian, as you’ve read even more aspects unfolded while in rehab, and now that I am at home living this way day-in and day-out I am constantly reminded of what I cannot do, of how helpless I am when faced with even simple tasks, reminded of things that I have lost and will probably never regain, and of new activities that I must engage in that I find onerous and unacceptable. I have not only lost the use of my legs but also any control over my bowel and bladder and so am a slave to a bathroom schedule that dictates my every move and requires me to use new ways of going to the bathroom that I won’t go into but that no one would ever want to do. I need to sleep on ‘incontinence pads’ so that when (not if, when) I leak out urine during the night it doesn’t stain the mattress.

I have no sexual function whatsoever, no ability to have an erection, nor to have an orgasm, or to feel anything below the waist that could even remotely qualify as sexual pleasure. This point was driven home to me while sitting on my balcony and watching several attractive women who also live in this apartment complex walk by. My 'radar' kicked in, but then immediately I realized the limitations I am now under. I didn’t think it would matter as much as it does, but I’ll have to admit, it does. It’s always good to give others pleasure, but to know you can never ever feel anything yourself is a bit much to fathom.

I can no longer walk, run, hike, ride a bicycle, ride a motorcycle, dance, or do anything that requires the use of my legs. I can only carry what I can pick up and put in my lap. I can’t pick up very much, not due to lack of strength as much as lack of leverage, anything over roughly 15 lbs and I fall out of the chair. I have suddenly gone from being 6 feet tall to just a shade over 3 ½ feet tall, and the number of things that are now out of my reach is amazing, not just things that are high up but things like the deeper shelves where you put your pots and pans. I can’t even roll over in bed without grabbing onto something to help me turn over.

I need to lift myself out of the chair every 30 minutes or so and hold myself up for at least 30 seconds to allow the blood to rush back into my butt cheeks, otherwise the muscle tissue will be starved for blood and oxygen and start to die, thus creating a pressure sore that at best will land me back in bed for several months to heal, at worst can go septic and cause a major infection, necrosis and even death. That’s how Christopher Reeves died, from an infection that started as a pressure sore. My nerve pain is constant and at certain times of the day it is very strong, to the point where I cannot talk when a wave of pain passes through. So far the medicine they have given me is only partially effective, and I am told that’s how nerve pain is, very hard to treat effectively. It also may never fully go away, only time will tell.

I have become dependent on others for the most basic of things, many of which no matter how long I am in the chair, no matter how skilled or crafty I become in solving the many puzzles that now confront me, regardless of if I get a car etc, I will still be dependent on others for help with things that I would have never needed help with before. If you know me at all you can imagine how much that grates on me.

There are more issues but hopefully you get the point, and sorry if it seems like a lot of whining and I most certainly am not trying to evoke pity or sympathy. But I need to make sure you understand even a fraction of what life is like when living with a spinal cord injury like mine.

Barring a major miracle this is how I will live the rest of my life. That is the issue at hand.

Most of this week has been spent in anger, frustration, and in grief, mourning the loss of my old life. They told us in rehab it would be like this for a long time, years for most of us. They told us the suicide rate for complete paraplegics like me is 5 times the national average for the first 4-5 years of being in a chair. After that it drops down into line with the rest of the population, meaning that it takes at least 4-5 years for most paraplegics to fully adjust and adapt. They spent a lot of time talking to us about suicide in rehab, both in groups and one-on-one. I can see why.

To be or not to be, that has been the question on my mind as well for this last week. But let’s be clear, this isn’t about being actively suicidal or having decided to commit suicide. It’s a bigger internal debate that is captured well in the soliloquy quoted above. Have you ever really read it? Go ahead, I’ll wait, it’s worth a complete read.They told us that suicide was a ‘permanent solution to a temporary problem’, and in most case I agree. I can’t imagine people killing themselves over the loss of a job; their girlfriend breaks up with them, etc. Those truly are temporary problems. This however is different. They also told me in rehab that every spinal cord injury is different, and that where mine is, and how it happened, the chances of any recovery are almost nil. So as I said above, barring a major miracle, this is in fact a permanent problem.

Do I want to accept this constrained life, this life that will never be as I want it to be, that despite my best efforts, no matter how much strength, determination, or willpower I throw at it, will forever fall short of the life I want and in fact had prior to my accident? Or do I choose to not accept it and finish what was started that day and interrupted by the EMT’s and doctors in the trauma center?

It is not in my nature to give up. My favorite movie is “Cool Hand Luke”, if you’ve seen it you know what I mean. If not go see it. It goes against every fiber of my being to even consider giving in to something and folding unless I have exhausted every possibility to remedy it. I’ve struggled and fought my way out of many situations in my life, and the one thing that kept me going was the idea, the promise that if I kept working on it, kept fighting it would be better and the situation would be resolved, the outcome acceptable. In this case however, no matter how much I try, no matter how easier it gets to perform those tasks that are hard now due to my getting stronger or getting smarter about how to do something, I’ll still be stuck in a chair, still without bowel and bladder control, still never able to experience sexual pleasure, and still dependent on others to a degree that is unacceptable to me.It may get easier to live like this, but barring a major miracle it will never get better. It will never be like it was; it will never even come close.

There are some who choose to accept the constrained life. In rehab I spoke with several folks who decided that being alive at any cost was good enough for them, that they were willing to accept the lowered standard of life. They told me the key was that they lowered their expectations of life, became willing to accept all those negatives I described above, because they for various reasons decided it was worth it. One guy was Catholic and just said suicide wasn’t an option because it was a sin. Two others I spoke with mentioned their kids as the reason they stuck around. They seem to be in the minority, apparently many paraplegics either do kill themselves or just stay at home and vegetate, living off of disability, many getting drunk or stoned, watching T.V. and depending on others for help.

The internal cognitive dissonance I have been experiencing between the will to fight and the desire to give up is a first for me, an unbelievable struggle in and of itself and very hard to communicate to you; when I start to describe it inevitably many jump to the conclusion that I must be actively suicidal and it makes it very hard to have a conversation when you ask “how’s it going, how are you feeling?” and then I really tell you. When you try to tell me “it will get better” you’re missing a critical point, better relative to what? Better relative to today? Yes, maybe. Relative to 6 months ago, before my accident? No way. Relative to what I hold currently as a standard of living, a quality of life worth putting in the effort? Life is hard even when you are able-bodied, free of any major disease or injury, and if you are at all a mature adult you learned early on that life was mostly work and a little fun, but on the whole worth the effort. In my case the scales have been tipped very far in the negative direction and I’m having a hard time finding the good to balance it out, to make it worth the effort.

Added to the struggle is the knowledge that so many of you are out there pulling for me to ‘keep at it’, telling me I’m some kind of inspiration, supporting me with your efforts and donations, how to quit on that? The outpouring of support has been overwhleming and greatly appreciated. It makes things even harder; it serves both as a positive and at the same time as a weight, and when I think of giving up I feel ashamed that I would be letting so many of you down.

I also know how hard this is on many of you, you too are mourning the loss of me and my function, and are worred about losing me as well. I share this not to scare you but to offer up what I so far have not been able to articulate clearly to some of you what is going on with me and why I act the way I do right now.

So that’s what is going on right now, I am battling with myself daily, and am pretty much a complete mess. In the meantime I do what is in front of me, as I learned long ago. I try to find better ways to get dressed, to wash the dishes, etc. I checked my mailbox for the first time since I lived here. Good thing I did, there are bills that need to be paid. I will pay them. I am looking for a car. I am still walking the line, moving forward, because I don’t know any other way.

I am not myself, nor will I be my old self for quite a while. You may see glimpses of my old self; I hope so, as I miss him as much as you do. I am doing the footwork as best I can, while I mourn the loss of my old life and I struggle with the larger question of ‘to be or not to be’. I am not actively suicidal nor do I want to die, but I don't want this life I have now either, and that is vexing me beyond words...

Elvis has Left the Building…

Heading out of the hospital for home, I saved that shirt for the last day...

Or at least I have. I am now officially a free man, home to fend for myself. I left the SCI rehab hospital Wed afternoon with Eddy and Cheryl, made it into Eddy’s beater Toyota truck without falling on my ass and rode off into the sunset. It felt really good to leave the hospital, but also very scary not knowing what was coming up next. I was heading to an apartment that had been just setup that previous weekend to make a new life for myself and I gotta say it’s daunting at first.

We got to the place and I was happy to see that putting Stacy in charge of the move was the correct thing to do, the apartment was setup almost perfectly. Eddy, Cheryl and I made a few tweaks but a big thanks to the entire move-in crew for doing a great job.

After Eddy and Cheryl left Ethan and Stacy came by and stayed the night to babysit me, I was glad for the company not quite knowing what to expect and how well I’d be able to handle everything. I’d practiced the various things I needed to do in the hospital but the setup of everything at home was different and the last thing I needed to do was land on the floor in the bathroom. Luckily it all went fine and I’m getting acclimated. I need a lot more practice with my transfers, but I made it to and from the shower and the bed without issues. It was really nice to sleep in my own bed for a change, without the noise and constant interruption of the hospital. I can’t figure out how anyone gets better sleeping in a hospital…

There are a few things we need to change in the apartment, the biggest are the carpet, it’s like trying to push through mud. Not quite sure yet what we will do with that one. The other is the front door; it has spring-loaded hinges that slam the door shut which makes getting into the place a pain. I wind up using my feet as a battering ram, which while innovative and painless (due to the lack of feeling) is probably not the best thing to do, so we’re gonna try to replace the hinges. Good thing there’s a Lowes across the street.

So today was my first full day at home, made it though ok. Stacy and I continued to unpack and sort out the apartment, trying to find ways to place things so I can get to them. Not only are upper cabinets useless in the kitchen, but the deeper lower cabinets where pots and pans go can be a problem as well. But we’ve been figuring it out slowly.

I don’t have a lot of deep philosophical insights today or major things to talk about, it’s just time to try and figure out how to live my life in a chair all day. It’s amazing how much you take for granted when you can walk around, but in a chair the whole world can seem like it was setup just to mess with you on purpose. But enough whining about that, need to push on. I’m sure I’ll have more updates next week as I settle in.

Half the Trouble is in the Trying…

I think this is pretty self-explanatory...

So another week of rehab almost gone by, release date is coming up fast. They say I’m making progress but of course it doesn’t always seem like it. But I feel a bit stronger, my transfers to and from the chair to the bed, toilet, etc. are getting better, graduated off the slide board very quickly and 9 times out of 10 I can clear the transfer first time. But that tenth time when I get it wrong can get real ugly…

They did a ‘procedure’ Wednesday to take out an intravenous blood clot filter that was stuck into one of my bigger veins in my leg 5 months ago during my trauma surgery. Apparently you’re supposed to take them out with 4-6 weeks of install, guess that one slipped through the cracks. They put me into a radiology operating room and had to use x-rays and ultrasounds and stuff to find the thing, then used a whole bunch of wires and stuff to go try and get it. They did all this though a whole in my neck. Medicine is really weird. Today my neck feels like I got hit by a baseball bat so they must have been wrenching on it pretty good.

I could do with a few years of no more procedures… ;-)

We went on our big Saturday ‘outing’ today, I got to pick where we went so I chose Valley Fair Mall, the biggest most crowded mall in the area. I figured let’s jump into the deep end, if I can manage a big crowded place like that, can manage a lot of other places. Went into a few stores to pretend to shop, some were more accessible than others, the Apple store was a real mess, but that’s a mess even on foot. Some of the others were very hesitant in the stores and moving through the crowd but I just figured “the hell with it, I deserve to be here just like the rest of the normal folks” so I just acted like I was on foot. A few people stared at me in the chair but not very many, I either smiled at them or gave them the angry white guy look, both were effective. Luckily I don’t do malls very much anyway, but if I did I’d probably grab a friend to go with mostly to help get stuff that’s too high to reach. Definitely won’t be able to try on pants to see if they fit, that’s a 20 minute exercise in frustration in a chair, all the while hoping you don’t strain too much and pee/poop. That would be an interesting litte episode in the dressing rooms at Nordstroms.

Tuesday we did a dinner night where a few of us cooked a full meal in the kitchen they have here for us to try and use and get familiar with doing household tasks. That was ok, but the more normal they tried to make us feel the more abnormal we really felt. I guess that’s part of the adjustment process. But I still made a really bitchen angel hair pasta with basil tomato sauce...

My new apartment is now full of some of my stuff thanks to Ethan and Stacy Nagel, Eddy Gonzalez and Cheryl, Jeff Gruetter and Shahin and Michelle Pirooz, all very good friends who I owe more than I can repay through this ordeal. Thanks very much guys, can’t even begin to tell you how much you all mean to me.

Attitude is getting a bit better, only pooped my pants once this week so that’s progress and definitely helps the attitude, and that episode was mostly due to the drugs that gave me Wednesday. Getting stronger as well but the shoulders are taking a beating, esp. my right shoulder which is already sketchy due to surgery 3 years ago. Trying very hard to ‘move out of the middle’, as I wrote about last time. Finding the willingness to even try is a battle at times, it seems so daunting to commit to a future in a chair when you’re barely able to do anything right and all day you worry about basic body functions. But the willingness is coming. Half the effort is in the trying.

Five more days and I’m outta here and in my own place finally after almost 6 months of being in one institution or another. Stay tuned for that fun … ;-)

This One's for You...

Scary looking dude, what's up with those socks?

First whole week at rehab done. Making some progress, up to 100 lbs on the bench press machine, can transfer myself from the bed to the wheelchair without assistance, etc. Doesn’t feel like much though in the face of what lies ahead.

Powerlessness. It’s a big scary word, one that shadows us our entire lives. When we’re born we are as powerless as can be, and spend our early years gaining control over our bodies, and later as we mature, over ourselves. As we enter adulthood we begin the process of creating a life that allows us to assert what we think is power over our environment and for some power over others. We spend most of our lives trying to maintain this illusion, but life and the world around us does not always cooperate and we are always reminded of how powerless we really are over things external to us. But that’s ok because it’s external to us, ‘factors beyond our control’ and such. We write ‘force majeure’ clauses into contracts, call them ‘acts of God’ or nature, fate, karma, whatever fits your paradigm. So we go through life getting into car accidents, having houses burn down, ballgames rained out and for the most part find solace in the knowledge that so many things are beyond our control, and pretty much everyone is in the same boat.

But it’s very different when you don’t have control over yourself. We always assume that despite what goes on external to us, we have control over ourselves, and due to that control we can navigate through whatever life throws at us. Well I don’t have that anymore and it’s really messing with me. I’m no longer who I was, at least at a functional level, and it is really a hard thing to adjust to, much less accept. I know longer have control over my legs, and as such am now constrained by what I can and cannot do from a chair. And I’m not talking about stuff like riding a motorcycle or climbing Mount Everest. I’m talking the day-to-day stuff that makes a person who they are. I see someone drop something and my instinct is to help pick it up. Can’t really do that now. Can’t hold open doors for people, can’t offer to help my friend move (not sure I actually will miss that part ;-), you get the idea.

You lose control over your bowels and bladder. Then the doc gives you pills to clean you out because he says you’re backed up. Great, now I have diarrhea and no bowel control. Try that for a couple of days and see what it does to your sense of self and your dignity.

I don’t want to climb Mount Everest. I just want to be able to get into the laundry room to wash my clothes but I can’t because the door is too heavy and once I’m in the door shuts and I get stuck in there. I want to be able to go to a friends house for dinner but not have to plan out how and when I’m going to do my bowel routine at someone else’s house, something that can take up to an hour to do correctly I’m told (I’m still learning).

There’s a lot to rant about with this condition. I’m in ranting mode right now, as you may have guessed. There are a couple of others here with the same type of injury and we’re all in rant mode, except the one who won’t come out of his room, he’s on suicide watch. We’re all trying to ‘adjust to our situation’. It ain’t easy. But there’s not much choice in the matter either. You either adjust to this or you give up. Half measures will get you nowhere. For a while you can find yourself lost in the middle, not committed to going the distance and working through it, not committed to grabbing the shotgun and getting it over with. It’s a bad place to be. I’m working my way out of that place right now. I’m leaning heavily towards going the distance by the way. But it’s amazing how had it is to make that commitment, you hang on to door number 2 (the shotgun) like a life preserver or something. It’s very strange, but I think it’s due to the uniqueness of this situation. Every time in my life prior to this, whenever I was hurt or injured, I knew if I did what I was told, I would be back to where I was before, or very close. But with this, no matter how hard I try in physical therapy, no matter how much I do what they tell me, I’ll still be paralyzed. I will be in an unacceptable situation. It’s very hard to focus yourself and strive to get what essentially seems to you like a place you don’t want to go. Sure it might get better, you get stronger, you figure out how to get into that laundry room without getting trapped, but you’re still in a chair living a life you’d never wish on anyone.

You’re not actively wishing for death, but you’re unwilling to accept life on the new terms it’s being offered to you. It’s a very strange place to be.
The power I do have is in my mind and my heart, and I’m using all I have and then some.

Like many of you I’ve had to dig deep for the strength to get through a tough situation, but until now I’ve never dug deep and come up empty. I’ve had a few days like that here, and will probably have a few more. I’m still digging though. I told the psychologist today that the main thing driving me right now isn’t me, it’s my friends, it’s knowing that you all are out there, pushing for me, wanting the best for me, and how can I give up on that? Eventually I’ll need to do this for myself, but for now, this one’s for you.

Thanks

A New Kind of Difficult

Me, or at least how I feel today... ;-)

Sorry for the delay, been busy getting my life all shaken up. Thursday I got the word that I would be transferring to Santa Clara Valley Medical Center to start my acute spinal cord injury rehab. The move was a bit rushed, and I’m having a hard time adjusting to my new digs on several levels.

First and foremost is the change from a small intimate home-type setting at Care Meridian to a ward in a county hospital, all institutional and stuff. I really wanted to take a moment to acknowledge the folks at Care Meridian, it was so hard to leave there, I bonded pretty strongly with most of the staff and 2-3 especially. Spending 4 months in bed was never going to be easy but they made it much more bearable than it could have been. I’ve never had to be so powerless and vulnerable in my life and they created a safe place for me to work through not only a lot of physical healing but the mental and emotional adjustments that come along with such a radical change in a person’s life when they have an injury like this. So to Colby, Claudia, Eleanor, Anneliese and the rest of the gang there, if you’re reading this I offer you my heartfelt thanks for everything you did for me.

Now I’m at VMC doing the rehab thing. I need to adjust to a new schedule, the nursing staff here is a lot less engaged and to be honest seems lost some times. I guess I just got used to a level of structure that now I find very much lacking here. I’m going to chat with the head nurse and see what if anything we can do to get things more on track. Maybe it’s just because I’m new here and they haven’t gotten used to me yet. We’ll see but if I need to remind anyone about my meds schedule again I might lose it.

Rehab itself is ok. The therapists are very nice and encouraging, and for the most part the work is hard but it feels good to be doing something. My body is so far out of shape from being in bed for 18 weeks it’s just ridiculous. My core muscles are so weak I have to prop myself up against the table when I eat in the wheel chair. I can hear my grandma’s voice in the back of my head, “elbows off the table!”. Sorry grandma but no can do.

I’m having a rough time overall with being in the chair. Sisyphus is what comes to mind, hence the image above. I just can’t believe how much harder it is to do pretty much anything when you are in this stupid chair. Some of it is my lack of strength or endurance, some of it is just because it’s new and I haven’t mastered the techniques, and it should get somewhat easier as time goes by. I know all this intellectually. However no matter how much easier it gets it will still suck compared to life before, and that’s what I’m struggling with currently. This is a level of constant, everyday difficulty that I’m having a hard time getting ok with, since I don’t really have an alternative. This isn’t like a new sport or hobby that I can say “naw, that was too hard, I’ll try something else”. There is no “something else”, this is how it’s going to be. Yes it will get easier but it will never be as it was, and I guess maybe I’m starting to really “mourn the loss” of living able-bodied like they told me I would.

Here’s the thing. I know I can figure it out, I know a lot of other people do it and from what I’ve seen if they can do it I can too. That’s not the issue, the “can I do it” part. The issue is do I want to do it. Now no, I ain’t all suicidal just yet so everyone can take a breath. But for this to work I need to want to do this, and to be honest right now that part just isn’t there. I’m not excited to be here, not excited to be up and in a chair, especially not excited at the fact that I need to start doing my own bowel management (I’ll leave that visual up to you, Google it if you are confused). I’m not sure what I need to do to get ok with all this, now that it’s really up and in my face. It was a lot easier to have a good attitude when I was in bed and being taken care of and the realities were off in the distance. Now they are up and in my face and scaring me a bit knowing that there is no option 2.

So today is struggle day, as will be tomorrow, and the next. The struggles will hopefully lessen, the difficulties diminish and my adjustment will hopefully continue for the better. I need to get my head right, I’ll keep you posted…

Take care everyone and thanlk you very much for all your support.